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Friday, March 13, 2009

Starting Over

Well, it's official. I finally talked to the Lyme doctor on the phone today and described the symptoms I've had this week, and he agreed that it seems I still have Lyme.

It was obvious to me by Wednesday when I still felt badly crashed, with ever-worsening knee pain. Joint pain has never been part of CFS for me, just Lyme recently. I started back on doxycycline Wednesday night (I had a few left over) and felt much better Thursday. Today I'm starting to feel run-down and achy again - obviously went through the brief (but welcome) improvement and am now entering yet another herx reaction.

I've been upset at times this week (I actually starting crying in the drugstore today!), but I'm in a better state of mind now. It is what it is, and the only way to get past it is straight through, right? I know I can expect to feel bad for awhile while I herx again, but I also know that beyond that I will feel good again.

One thing that helped me today was reading a very inspirational magazine interview with Michael J. Fox. Years ago, I read his memoir, Lucky Man, and was so impressed with his positive, upbeat attitude. Now he's written another one called Always Looking Up: the adventures of an incurable optimist (to be released April 7), and it sounds just as inspirational as the first. Here are some excerpts from his interview in this month's Good Housekeeping magazine that really resonated with me today:

"It is about trying to still the voices in your head - the monkey brain that's saying, "Gotta do this, gotta do that" - and trying to really listen."

"I would say look at the choices you have, as opposed to the choices that have been taken away from you. Because in those choices, there are whole worlds of strength and new ways to look at things."

"It's just constantly being in the now; knowing you don't get to choose whether you move forward. You're going to move forward, so don't fight it."

Well, my little monkey brain was definitely in gear today, so I'm trying to quiet it down and accept what is happening and find the best way to move forward.

We have a busy weekend planned. My mom and her husband are coming to visit, and we're going to a soccer game in Philly (one of the boys' Christmas gifts) Saturday evening. I know I might end up feeling like crap this weekend, but it's OK. I'll be with my family, and I'll try to enjoy their company.

9 comments:

I can so relate, Sue. I cried in the grocery store once and had someone ask if I was ok. I wanted to say, "No, I'm not! I have Lyme!" But you are approaching it well - I need to take a lesson b/c I get beaten down sometimes. It is what it is, as you said, and we have to get through it.

Hi Sue, Cheering for you. Thank you for the quotes from Michael J. Fox. I've been meaning to send you some songs. (It helps that I have a teenage daughter with good musical taste - I'm never without inspiring music.) I go to You Tube to listen to them, watch the videos, or sing along with the ones that have the lyrics. It's Only Life, Kate VogeleHold On, K.T. TunstallFearless, DaechelleWhen You Believe, (I like watching the David Archeletta video when he sang it on Amer. Idol)One Step at a Time, Jordan SparksOrdinary Miracle, Sarah McLachlan (from Charlotte's Web movie)The Show - Lenka,(This is an especially cute video.)Viva la Vida, Cold Play (just 'cuz it's a good song.)

Thanks for the songs, Sherry! I will probably need some feel-good music next week, so I'll definitely check these out after the weekend. I love KT Tunstall and Viva la Vida, so I look forward to listening to the others. I still have a bunch of iTunes gift cards from Christmas that I haven't used yet!

"Crying in the drugstore" -- maybe that should be the name of the CFS song. I've done that too. It was the last time I went on my own in fact. I'd made it as far as the check-out line, only to find that the lines were really long. I knew I couldn't stand upright for the time it would take to check-out. I started to cry and then...just left my basket full of stuff, got into my car and drove home.

Sue - Sorry to hear that things are not going well. I'm wondering, though, about how you are able to decipher "this is my CFS" vs "This is my Lyme." I find this to be a very frustrating part of having co-illnesses, the never being able to pin it down to one thing or another, and wonder how you have come up with a solution that works for you.

I read Lucky Man, too, and found it to be wonderfully inspiring. I hope your weekend is going well, and that you're feeling as well as possible.

Goodness...Lyme too? I was tested for that as well since we share such similar symptoms, but it was negative. I feel for you!

I adore Michael J. Fox as well. Loved his book, too, and I used to have posters of him on my bedroom walls in junior high. What an impressive human being. Glad to know he is publishing book #2 (on my birthday!).

I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.

About Me

I'm a freelance writer who loves to read and cook. My husband and I have two sons, and we all enjoy travel and being outdoors. My older son and I both have chronic illnesses, but we focus on finding joy in every day!